misc replies and update on us

July 9, 2003

Remember us? Anyway, someone asked about tuneups. It varies per the

kid. Mallory gets them every 3 months, usually for 21 days, though

sometimes they extend it (like last time, the partner in the practice

extended it so she would be healthy through the summer). Her CF is

complicated by her OSA. And, for some reason, her heartrate is very

elevated when she needs a tuneup (like up to 140 and higher, resting)

They also are trying a new regimen with her, tobi for two weeks, then

cipro 2 weeks, and so on, except during tuneups, so that she is never

without protection. is about at 5 month tuneups, and he has

pretty complicated sinus probs as well. We can tell by his exercise

tolerance when he needs a tuneup, and he falls asleep on the way home

from school and we even have trouble getting him up for dinner at

those times. ph has only had one so far. All three have ports,

so it is easy, we do it all at home with home ivs and it works very

well for us. One caution, if you go the port route, learn to do it

yourself and don't let anyone else touch their ports. Even our doctor

told us that is the smartest way to go. We have never once had a port

infection in any of the three kids. Ron's perspective, and the doc

agreed, is that we are alot more invested in their ports than anyone

else who might touch them...

Anyway, all had tuneups right b4 summer, so all are doing well now,

except Mallory's OSA continues to be a problem as she is really

struggling at night. both docs, but one in particular, keeps pushing

the bipap....but ron is so worried that she might become dependent on

it. we know you don't get dependent on o2 (gee, we all are, right?)

but what if she becomes dependent on the machine doing the work for

her and then it quits working?????

Anyway, we are on vacation in canada, as usual for us at this time of

yr. Also, as usual, I have to leave on monday to return for work

reasons, and Ron and kids will stay here and I will return in August

for about a week, and we will get home right before school starts.

Hope everyone on the list is doing well...sorry have been out of touch

so much. have had my own health issues to deal with, as well as ivs

before our canada vacation, and spring break we took thekids to

Disney, and then there is work...just not enough time in the day. But

anyway, wanted to say hello.

Take care all

Jen

Mommy of 7, 3 with CF, one with JD and two neices with CF

July 10, 2003

Hi gal, I am so glad to see you on list again. You are a vital point of

knowledge to each of us. I am glad your getting this time away....BUT--I

know your offices & they will keep in touch with you & you in them.

BUT------Anyway , as I said in my post yesterday -I am looking forward to

seeing you soon too. Take care. love to each

Did any of the family get there yet.? will they be there for awhile? have

fun..........

LOVE & HUGS, GRDMBEV